Wednesday, November 23, 2011

Reports of My Death Have Only Been Slightly Exaggerated

I've been back in the hospital with more problems. To make a long, terrible, miserable story short, I'm off the CAL-101 and on prednisone. The operating theory from Dr. Coutre is that I have coloitis, probably caused by CAL-101.

However, as of Friday the 18th, I believe (dates slip away when you are terribly ill), I was released from UC Davis because there was nothing more they could do for me that I couldn't try to do at home.

I am now not undergoing any treatment for my rapidly progressing CLL. I feel poorly and am confined to bed rest. I'm trying to get out and get some little bit of exercise, but incredibly, it has been very difficult to walk more than 100 feet without getting winded and having to sit down. I went to the local grocery store yesterday, and I had to have the bag lady help me out with a tiny amount of food. I was exhausted. By the time I drove home, I couldn't get out of the car without resting for a few minutes. My heart seems to have been weakened by this ordeal.

We are trying to get on some other desperation trial to keep me alive long enough until the ROR clinical trial starts up in probably a year or so. The odds are long, that's for sure.

No sign of transformation so far, thank the Lord.

My quality of life is poor, but I must admit I can now sit at the computer for a half-hour at a time. Paying bills and everything else is now the purview of my wife and the power of attorney for financial affairs. Thank God I took care of that several years ago!

And thank God for caregivers such as my wife. I would truly not be able to keep myself, or my pets, alive without her. I say prayers for her as well as for myself. Little did I know how dependent I am on others.

Sunday, November 6, 2011

Back out of Last Hosptial Stay

I spent the past week at UC Davis. Aggie college that treats more cows than people.

To say I was unhappy with the level of care I received would be an understatement. My questions went unanswered, I never did see my oncologist, I had three crazy roommates (one Mexican gangbanger type threatened me when I asked that his coughing and sneezing grandchild wear a mask).

My pain was never adequately controlled even though I complained about it. There was no mention of scans for my small intestines, even though they brought it up in the first place.

And to top that off, the resident that was put in charge of my case (Dr. Beelzebub) tried to blackmail me into have an unnecessary procedure so he could practice on me before he's let me go home. And then they examined a biopsy for cancer, and when none were found there (they may indeed be elsewhere) he declared a this excellent news to be no better than a 'mixed bag'. I has what the down side was and he said because they didn't know what to do with me.

Earlier, this fresh resident he told me in in best, pump-out-chest, brining his height to all of 5-8, that I had one month to live.

I told him I didn't want to ever be seen my him, ever again. He reported my impertant attitude to his superviors, who couldn't understand why anyone would feel this way.

Dr. Beelzebub would make a fine vet, perhaps, or a pest control inspector. Wait! scratch the vet..I wouldn't want a vet like that anywhere near my pet.

As far as things go, no closer to understanding what is going on now that before. Since I'm home, my pain is adequately controlled, I'm waiting to see Kipps again.

I'm beginning to see that Churchill was right about the Soviet Union: 'a riddle wrapped in a mystery inside an enigma.'

Thursday, November 3, 2011

Large Diffuse B Cell Lymphoma

Transformation to large diffuse b-cell lymphoma. It's particularly troubling that there is no money for research into this affliction that affects so many CLL patients, especially since the risk is increased significantly with the use of FCR and other drug combinations that combine alkylating agents with purine analogs. This provides a potent mutagenic punch to the unstable CLL genome.

Contrary to Dr. Hamblin's glowing endorsement of FCR, and MD Anderson's love affair with the dangerous drug combination, stay away from this unless there is no other option. (Dr. Hamblin says anyone who has a serious side effect such as Richter's just 'gets the sticky end of the lollipop' a description I find insultive, dismissive, and arrogant.

For me, it's too late. but for those out there who are facing treatment decisions, choose something else. Especially with the prospect of an actual cure dangling tantalizingly in your faces.